Ma Chen- Autism School in China

Organized by The LD Podcast

Thank You- CC Chapman, and oovoo!
There's a great little program enabling easy simultaneous video chat called oovoo. As part of their recent marketing campaign, they have been running special "speakers" panels, called My Oovoo Day, where you can speak to someone like John Wall, from Marketing Over Coffee, Chris Brogan, Mitch Joel, or CC Chapman. Oovoo is giving them a "stipend" for charity as a result, and CC Chapman has asked to split his donation 50/50 between the Susan Reynolds Frozen Peas for Breast Cancer fund and this Ma Chen- Autism in China program - meaning an additional $750 will be coming our way!

Thank you so much, CC, Oovoo, Crayon Marketing, Scott Monty, and everyone else for their support!

Thanks also to Chris Penn and Mark Blevis for their recent help and donations!
If you'd like to know more about autism in China....
here are a few links to check out.

Blog from parents of an Autistic Child in the US:
http://adventuresinautism.blogspot.com/2006/12/autism-in-china.html

From the AutismVox website:
http://www.autismvox.com/autism-in-china/

China's Autism Program:
http://www.cautism.com/english/

An article from China.org talking about how non-governmental organizations run by parents are taking the lead in providing services to children with autism in China:
http://www.china.org.cn/english/MATERIAL/184621.htm

An abstract of a recently released study on the number of children with autism in China:
http://jcn.sagepub.com/cgi/content/abstract/23/1/67
*please note that the registry for autism cases in Hong Kong opened in 1986 in a single hospital, but data began to be more widely collected in 1997.

researcher in China asking for help with autism information:
http://hum-molgen.org/bb/Forum2/HTML/000179.html
Life in China
This effort has brought a number of wonderful people to my attention, including a gentleman named Tom who runs a project in China that builds libraries for children. Tom and I talked for about an hour on the phone Monday, talking about how life was in China for people with disabilities.

In China, people don't have retirement or 401K accounts. It is expected that children will take care of the adults when they get old- your child is your pension plan. With the limitation of one child per family, this means there are no siblings to help a disabled child when they grow up, nor is there anyone to take care of the child's parents when they get older and need care as well. The one child per couple policy was instituted in the 1970's; Doing the math, this also means for every child, there will soon be two older people depending on them for care and support.

If your child has a disability like autism, the long term future for you, your spouse and that child are all in jeopardy.

If programs like Ma Chen's and the farm succeed, there will be a safety net for children like Yu Miao, Ma Chen's daughter. They will have a future, rather than none at all.
Update and thoughts
I received this email from Ellen Zhu with the Wall Street Journal in Shanghai, who has been in touch with Ma Chen, and I am copying most of the text here.

Ms. Ma Chen sends her most appreciation and best regards to all of you kind people.

DearWhitney: Thank you so much. And please wire your donations throughWestern Union. OnceWestern Union accepts your remittance, The wireshould land in China within half a hour. Ms. Ma can go to a post officeor any branch of China Agriculture Bank to withdraw the money byproviding these information. All fees are on sender's account. Aftergetting the donations, Ms. Ma would love to send you her family photoand let you know how they will use the money.

All of the "red tape" has been handled, so we will be able to get the funds 100% to Ma Chen and her school!

Another project, called the Five Points project also exists in China. Helen, one of the directors, also wrote, and we are trying to work together to make sure that beyond this goal to raise money for the farm, people are aware of the issue of autistic children in China. Helen writes:

Hi Whitney and all,

First of all, I am thrilled that there is so much enthusiasm andsupport of services for children with autism in China. It sounds likeyou are moving quickly with your fundraising efforts for Ma Chen's farm.

Currently in China there are hundreds of organizations which servechildren with autism; over half of these are run by parents. The FiveProject Board wants to support many of these organizations while at thesame time being sure to know more about the organization beforehand. Organizations we are currently supporting are ones we have known andworked with for years. I am currently in China and will talk to TheFive Project Board about going to Hangzhou to meet Ma Chen.
We will stay in contact with you and hope to be able to help in the future.

The Five Project's goal is to support many of the organizations thatare trying to help children with autism in China. In addition to theones we support currently, we are open to supporting Ma Chen's andothers, once we have met and understand more about the services theyprovide or seek to provide.

The response to the WallStreet Journal article is wonderful, with so much interest beinggenerated for helping these children. As you said, Whitney, so much ofwhat is being provided by these organizations is either provided byparents or paid for by parents. There is so little provided by thegovernment and so raising support and awareness is essential. Havingenthusiastic people like you is definitely going to make a hugedifference.

Thank you all! It means a lot to me that there are so many others caring about helping people with autism in China.

Helen


This is terrific, because it means we are also helping to connect the Five Points Project with Ma Chen and her school, hopefully providing a connection that will help the effort beyond this short term project.
Ma Chen- Autism School in China
A week ago, an article in the Wall Street Journal caught my eye- a mother in China discovered her daughter had autism. There were only 2 schools in all of China for autistic children. Ma Chen opened an additional school, and is currently hoping to buy a piece of farm land for $10,000, so that the children will have a place to go and something to do after they finish school.

China is a place where disabilities are often seen as a sign of being a bad parent, even though we know that many of them are genetic disorders. The New England Journal of Medicine reports that there is at least one form of autism caused by a spontaneous "micro deletions and "micro replications" of specific genes. You can read more about it here.

I want to help. By coincidence, one of my childhood friends is the Senior Cultural Attache for the US Department of Agriculture in Beijing, China, so it seemed easy enough to email him and ask if there was any way to verify the story. If we could, I want to try to raise enough money, $10,000 US, to help Ma Chen purchase this farm as a "Mothers to Mothers" way of making the World better for our children.
I asked my friend if there was a way to get the money directly to Ma Chen, so it did not go through other agencies and get lost in the shuffle. My friend continues to pursue the matter through diplomatic channels as we speak.

In addition, Ian Johnson from the Wall Street Journal has been in contact with their office in Shanghi, and can help us arrange a Western Union transfer directly to Ma Chen and her organization to help her with her school and the purchase of this farm for the children.

I think it is currently "safe" to try to raise funds to help Ma Chen and her school and have confidence we can get the money directly to her.

As a mom of a child with a learning disability, I know how painful this can be, and how much worry it causes. It's even harder for the parents I know who have autistic children, where they don't know whether their child will be able to hold a job or make a living when they grow up, or what will happen to them after the parents pass away.

We are so lucky in this Country to have services at all for autistic children- imagine living in a Country of 1.3 Billion people, where only two state-run schools exist to serve all of the people with autism, in a culture where the very existance of autism has only recently been recognized as a disability. US rates of Autism are estimated to be one in every 166 births; if we assume a conservative figure of one in 500 births for China, that still means over 2.6 million people in China may have an autism spectrum disorder.

Our goal is to raise $10,000 for Ma Chen, to help her purchase the farm, so these children have a place to go- a sheltered work environment, where people understand them, and a place where they can be productive.

Thank you for your interest and support, and we'll keep you posted to our progress as this story continues.

Whitney Hoffman
The LD Podcast
If you have any questions, please contact me directly at ldpodcast@gmail.com.



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